Day 12- Still Discouraged

lisa15601 · Post by **lisa15601** » Wed Dec 01, 2010 11:54 am

I can't sleep. I'm lucky if I get 2 -3 hours a night. Desipramine is not working. Valium works for a little bit. Please, please I know its early in my treatment, but did anyone else get this insomnia. Im pretty much GF/SF. Some Normans and some D. Please help

Post by **tex** » Wed Dec 01, 2010 2:34 pm

Before my symptoms started, I averaged around 8 hours of sleep each night. After my symptoms started, I averaged around 4 or 5 hours of sleep each night, but of course, some nights I wasn't able to sleep at all, so I took naps during the day whenever possible. It took me a year and a half to reach stable remission, but for about the first 5 years after remission, I still only slept about 4 to 5 hours per night. These days, after over 6 years of remission, my sleep pattern is still somewhat erratic, but I do a little better, and I think I'm averaging closer to between 6 and 7 hours of sleep each night, provided that I stay in bed and keep trying. I often wake up after only a few hours of sleep, though, and have a tough time getting back to sleep - sometimes I just have to give up and call it a night, and hope that the next night will be better.

Exercise helps, of course. The harder I work, the better, (and longer), I'm usually able to sleep.

Tex

catsrule · Post by **catsrule** » Wed Dec 01, 2010 2:39 pm

I have sleeping issues too since I got this. This is going on 7 weeks for me. I slept just fine until this. On a good night I will get 5 -6. Bad night 2. It must be something with this crud that causes this. I also have night sweats every night since I got this. I have been taking premarin since I was 30 so it's not menapause.

JoAnn · Post by **JoAnn** » Wed Dec 01, 2010 2:47 pm

Lisa, I started having sleeping issues before knowing I had mc and attributed them to hormone issues. I sleep much better after treating my mc with diet and meds and taking bioidentical hormones. JoAnn

Beth · Post by **Beth** » Wed Dec 01, 2010 5:48 pm

Hi Lisa,

What's keeping you up, do you know? Are you in pain? Or are you just awake? I had extreme insomnia this summer, often getting 2 hours of sleep at night. But that was because I was still in withdrawal from klonopin, which I was on for a number of years. Ironically, I was on it for sleep. Please, please keep in mind that if you develop a dependency on valium that your insomnia could get even worse. Mine got worse after being off the drugs for 4 1/2 months. Bizarre, I know. I know how desperate you are, but I would not take that stuff more than once every two weeks. You need to find something that will help you that will get at the root of the problem, not mix up your brain chemicals and force you into sleep. I completely commiserate, though - insomnia is literally torture.

Hang in there . . .
Elizabeth

klhale · Post by **klhale** » Wed Dec 01, 2010 5:57 pm

I have the same problem. I take one Lorazepam(Ativan) every night. See if you can get Lorazepam instead of valium.
I don't think valium is really for sleep.

Beth · Post by **Beth** » Wed Dec 01, 2010 6:37 pm

Lorazepam is actually really bad, too, in terms of the way it affects your brain after you've been on it a long time. Be really careful with that stuff - I wouldn't want anyone to suffer the way I did.

grannyh · Post by **grannyh** » Wed Dec 01, 2010 8:56 pm

I started taking temazepam a year ago.. finally I sleep 6-7 hours a night!
grannyh

hoosier1 · Post by **hoosier1** » Sat Jan 08, 2011 12:47 pm

Hi Lisa,

I'm no fan of pharmaceuticals to treat what ails us, however I do know that using Valium or Ativan to go to sleep is a No No. It can create a dependency that will only worsen over time. You may be experiencing this.

I take valium at times so I understand the sleepiness it can cause. I too have fallen asleep on it, however, not intentionally. But I do avoid it at bedtime.

Perhaps Ambien would be a better choice if you need help sleeping? Or you could try Benadryl?

But to put your mind at rest, with this MC (or whatever it is I have), I don't sleep as well or feel as rested either. I seem to wake up at wee hours of the morning. And there are days where I could sleep all day. You can see the bags under my eyes.

Wouldn't it be great if we could all simply sleep when our bodies needed it, and worked when we felt awake and energetic?

Regards,

Rich

hoosier1 · Post by **hoosier1** » Sat Jan 08, 2011 12:59 pm

And Lisa,

Try not to get discouraged. Day 12 is very early in your treatment process. I don't even count the days anymore (but I did, just like you). I was getting, or displaying, OCD over my day count. I simply try to casually gage how I feel from day to day. I keep my expectation level low or "realistic".

I am still trying (and getting better at it) to accept my condition as I feel, having been coached by others and specifically Gabes, that that is part of the healing process. And as much as we may not like it, our MC is also a feature which makes us all unique, yet with a common bond.

Like you, I don't enjoy this ailment, but I have found some silver lining in all of this (and being the eternal pessimist, this is a huge feat for me). The GF diet (primarily for me) has cut my cholesterol level in half. My doctor said only a statin would do this. Additionally, I had formerly been lackadaisical about fitness, etc. But MC forces me to stay fit and eat healthfully. So I am getting my lazy (and scrawny) butt off the couch to at least walk a half hour a day now. As I gain more energy, I will do more. Prior to MC, I would have kept abusing myself.

So in my case, and perhaps yours and others, MC is a wake-up call to change our lives. My body is clearly telling me I cannot continue to treat myself they way I had for the last 44 years.

Lisa, try to stop counting the days. Perhaps see how you feel, comparatively, in a couple weeks or in a month? As Tex routinely and so wisely states, it takes a lot of time for many of us to achieve sustained relief. Look at how long it took Polly to master the diet and get results. We are all different.

Hugs and more hugs,

Rich

grannyh · Post by **grannyh** » Sat Jan 08, 2011 1:06 pm

Ambien/lunesta can have strange side effects .. a friend got up in the middle of the night and ate the middle out of a pan of brownies.. she woke up in the morning with brown stuff all over her jammies.. thought the cat had taken a dump on her... but it didn't smell bad... LOL When she got to the kitchen there was a mess around the brownie pan..

I switched to temazepam since neither of the highly advertised drugs kept me asleep.. I can go to sleep in the middle of traffic but I wake up about two hours later wide awake.

My family doc has had folks on the well advertised drugs find themselves in the jammies in walmart in the middle of the night rooting through the snack aisles!

The key to using sleep aids.. he said is do NOT take them and then stimulate your brain.. on the computer or with tv. He said you will keep half your brain awake and the other half will go to sleep.. when you go to bed.. your brain will be confused... (my version of what he said).

Also he told me don't take them all the time.. take a break or you will become dependent on them.
grannyh

hoosier1 · Post by **hoosier1** » Sat Jan 08, 2011 1:08 pm

Granny,

I have heard of stories like that regarding Ambien and Lunesta. My mothers has taken Ambien for over ten years and has not had any side effects life that. However, I do know that I cannot depend on her in the middle of the night if need be as Ambien knocks her out cold.

I think there are no perfect answers for supplementing sleep with pharma.

Rich

tcorbett · Post by **tcorbett** » Sat Jan 08, 2011 2:52 pm

I hadn't been sleeping thru the night either. I used to wake a lot to go to the bathroom, other times, stress. My GI put me on amytriptalin (sp?) - it is an antidepressant and a sleep aid. You can tell time by when I go to sleep now, it took a few weeks to get the right dosage. I am now feeling human again. My GI said you need a good nights sleep to help your body to heal too! I am also on Apriso for my MC and I'm on the SCDiet.

Good luck - I would talk with your GI about the sleep issue - it wears you down. I hope you can get a nice restful nights sleep soon!

Theresa

hoosier1 · Post by **hoosier1** » Sat Jan 08, 2011 3:11 pm

Theresa,

Great idea! I forgot about Amitryptaline (Elavil). At 10mg or less, it puts me out for 10 hours. They prescribe it for IBS to slow the GI. I actually tried it a few nights ago but it actually caused so much bloat I find I can no longer take it. It did help me years ago.

Be sure to take it early in the evening because the sedation effect lingers well into the next morning. I found it best to take 5 - 10 mg at 7pm.

But it will help those with loose bowels, in general. At such low doses, this very old anti-depressant has been proven also to help with chronic nerve pain. At higher doses, like above 70mg, it is for psychological use I recall.

Excellent thought.

Rich

Gabes-Apg · Post by **Gabes-Apg** » Sat Jan 08, 2011 3:12 pm

Lisa
i dont want to sound like a broken record but 'hang in there' things will settle down, things will improve it takes a bit of time.
as you are unsettled about the current situation this would be affecting your ability to have good quality sleep

if you read the articles about people having issues getting babies to sleep it mentions things like what the baby has for dinner and ensuring that meal being settled is important, using relaxing techniques to quiet the mind help (ie lavender bath, relaxation music)

for me i have my main meal at lunch time and a smaller meal at dinner, this system suits me and I sleep better, I also have a end of the day process for my mind where i write notes in a journal, this process means that things that may be troubling me are written down so i dont have to keep thinking about them, and i use relaxation music to help me turn my mind off.

as Rich said, it is only day 12 and early in your new treatment process, and like he said, dont count the days. Using the journal may help you to see small improvements that are occuring.
Using the meds is good but it is not the guarenteed solution, we still have to nurture our bodies and have the right attitude to attain success...